I really don't know where to start! This is going to be long with some background info. I've had my colostomy for almost 2 years now and life is so much better since the surgery, but the shape of the stoma has been causing me problems the last few months. About a year ago, I went gluten-free because we found that wheat was irritating my Crohn's, which took my output from gassy, liquidy, icky, multiple times a day to normal (or very close to) 1-3 times a day. That was fabulous as I haven't had normal output since I can't remember when. I was diagnosed with Crohn's in '85 and have been on just about all the medications/injections there are. Humira got me into remission, but I had so much scar tissue from multiple fistulas and colo-rectal valve resection that my rectum was closing off. Hence the ostomy. My health was so poor and weight so low (for me) that as I gained weight, my stoma has really changed shape.
My stoma looks like Homer Simpson's mouth! The huge top lip and recessed bottom lip! This is the problem. After Christmas, my GI and I decided to stop the last of my Crohn's med and see how I do. I feel great, but my output has become more liquid the longer I've been off the 6mp. I don't want to go back on the 6mp because it's caused me to be susceptible to skin irritations/infections.
Now, because my stoma has a recessed bottom side, I seem to be burning through the wafers in 2-3 days. I'm used to going 5-7 days without having to change wafers. The top of the wafer is still good and tight and hard to get off, but the bottom... Different story! I've used Eakin seals, pastes, different setups, and found a setup I really like, but it's lasting shorter and shorter times.
I've tried changing my diet, but I'm limited to gluten-free foods and I don't know what else to try. I'm up for any help anyone can give me! PLEASE!!!
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